Monday, January 13, 2014

EndoMarch2014

There is a movement to raise awareness about endometriosis and other chronic pelvic issues, on March 13, 2013 all around the world. I am so excited to help spread the word about the EndoMarch2014! The goals of the march are all areas that need attention when it comes to this illness. I will lay out my understanding of the goals and what I think of each one.

The Endo March wants to unite women that suffer from endometriosis and their families and friends. We all know that living with this illness can be trying, to put it politely, at times. As hard as it is for us to live with and through, it can be just as hard for those that love us to watch. The march wants to make sure that we can all meet and find the support that we need. I must say that the march is already accomplishing that goal. Since I found out about the EndoMarch, I have found so many #endosisters and I couldn't be happier about that. It is comforting to know that I am not the only one that has the feelings and fears, and that I will find the support that I need when I feel like I am losing the fight. I am thankful to the EndoMarch for providing me with an avenue to meet and befriend other women that are just like me. This is a goal that will definitely help many of us stay the course and keep fighting
Another goal is to give endo sufferers and their friends and family the ability to speak up and out about endometriosis. If it weren't for this march, I would not have met some special women that encouraged me to write a blog. I keep to myself, due to my illness, and haven't had the courage to speak out about the issues that I have, while trying to live life with endometriosis. I have always been made to feel like it was my issue and I shouldn't speak about it. I know many women that have dealt with the same feelings and the EndoMarch has given many of us the confidence and knowledge to know that it is not just in our heads and it is a real disease, that deserves real attention. 
Another goal is to educate more people about endometriosis and the effects that it has on girls of all ages and their friends and families. If we could educate schools, the courts, and people in general, then maybe women wouldn't continue to get disciplined for things that they have no control over. One way to educate more people is to have public service announcements . You see public service announcements about bullying, diabetes, breast cancer, and so much more. Endometriosis affects more women than breast cancer does and yet it doesn't get the same attention. It is said that you can't die from endometriosis, but that is not true, and I think that is worth bringing attention to. The endometriosis alone may not be lethal, but the side effects and complications from having it can be detrimental to a sufferers health. The mental toll that endo can take is known to cause suicidal thoughts and actions. Dealing with endo can also cause severe anxiety in a large amount of sufferers. I suffer from severe anxiety and it plays a definite part in my mental health while trying to live with and understand how to deal with my illness. I think that public service announcements would shed some light on the real difficulties that women have to endure while living with endometriosis. 
The medical community has an amazing lack of education and understanding of endometriosis. I personally have experienced the lack of education and understanding. I went to a female gynecologist, in February of last year, that told me that I was "normal" and that I was having "regular" cramping, just like many other women experience. I had brought my post op report to show her that I had Stage 4 endometriosis, and she still had no sympathy or understanding of what I was going through. She wrote me a year's prescription of Aleve and sent me home. My husband and I discussed the doctor's visit and we were both disgusted at the lack of understanding of what I was going through. I cried because I didn't think that I was going to get the help that I desperately needed. I luckily found a support group that referred me to Dr. John Dulemba, an endometriosis specialist. Come to find out, I was far from normal. I had one big mass of organs in my abdomen, had advanced stage 4 endometriosis, and adenomyosis. If there was more education about endometriosis and its symptoms, then maybe there would be fewer stories like mine and more stories of women getting the help that could save their lives. Along with education of the medical community, the hope is that there will be more dedication to finding a cure. If it is known that so many women suffer from this illness, and the toll that it takes on so many people, then maybe someone with medical knowledge will be motivated to hunt down a cure. There are many medical professionals dedicating their lives to finding a cure for cancer, diabetes, ALS, and so much more. We need more searching for a cure to the illnesses that have been affecting millions of women for far too long. 
The only way to diagnose and treat endometriosis is to have surgery. Surgery is invasive and can cause other complications, including death. There should be other ways to diagnose this illness if nothing else. Another goal of the EndoMarch is to find non-invasive diagnostic tests and improve health screenings for girls and young women in school. There are many chronic pelvic conditions, endometriosis included, that young women hitting puberty suffer from. If these conditions were caught earlier, then these young ladies would have a better chance at leading a more productive and happier life. Treatments could be administered earlier and the solutions could be found that would not impact their lives so drastically. Some of the treatments currently out there for some of the chronic pelvic conditions are just as harmful, if not more harmful, than some of the illnesses themselves. Going with out a proper diagnosis can cause these illnesses to become exacerbated and inflict unnecessary pain and suffering. We all deserve to find help for the illnesses that complicate and interrupt our lives. We deserve the ability to make choices in life and not have our illnesses make them for us. 
There are private and government organizations that can help with funding the search for a cure, non-invasive testing, and public awareness. The National Institutes of Health (NIH), the Department of Health and Human Services (DHHS), The Center for Disease Control (CDC), and the Surgeon General are particular governmental institutes that are crucial to work with. They have the ability to change the way medical professionals, government entities, and the public in general, look at endometriosis and other chronic pelvic issues. If these institutions would start talking about the illnesses, it would open people's eyes and cause more of a change in the way these illnesses are judged and treated. I know when I was in school, I would miss 2-3 days of school every month. Between throwing up, bleeding heavy, hot and cold flashes, and the excruciating pain, there was no way that I could learn, let alone function, at school. Now a days when you miss too much school, you are sent to court and punished for truancy. If people understood more about these chronic illnesses, then we may be able to save young ladies from being punished for being ill. We could find doctors that could help young ladies live a more "normal" and productive life, and not have to miss out on school classes and activities.

It was not my goal in life to be stuck in my home writhing in pain. I didn't sit at home, as a little girl, and wish that I could stay home and be stuck in bed, on the couch, or in the bathroom. It wasn't my goal to feel like less of a person for not being able to clean my house, wash my clothes, or be a good wife to my husband. If there was a real solution out there that would allow me to actually live my life, I would jump on it in a second. It is my belief that the EndoMarch is doing everything that they can to find that solution for me and every other sufferer out there. If I can help in those efforts in any way, I am going to do it. I am not rich, famous, or even known to very many people, but I do have a brain, heart, soul, and voice. One person can help make a difference, but I consider myself one person among millions that are standing up and fighting for something that is long overdue. I am going to do my best to use what little I have to help make the EndoMarch as successful as possible. I need the goals to be met just as bad as every other woman out there that suffers from a debilitating chronic pelvic disease. I have suffered for 20 years with endometriosis and do not know how long I have had adenomyosis. I think that I have suffered long enough and deserve some answers and recognition. Anyone that has suffered for years and been made to believe that they are not deserving of help, should be recognized as being strong, stubborn, and more full of life than most. The EndoMarch has given me a renewed sense of hope and I could not be more grateful. 
Please help us all by checking out the EndoMarch website and read the stories, goals, and information about endometriosis. Help us educate the world and spread the strength and hope of every woman that is fighting like a girl. www.millionwomenmarch2014.org




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